Category Archives: Epilepsy Awareness

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Shaken, Not Stirred

When I was pregnant I read “What to Expect When You’re Expecting”.  People offered advice, whether I wanted it or not. Guess what?  There isn’t a book called “What to Expect When You Have Epilepsy”.  That might have been helpful for me, or maybe not. It might have scared me, or maybe I would have been better prepared.

I was cruising along just fine when epilepsy hit me right on target (pun intended) and distracted me from my very organized, multitasked and planned out life. For 7 years I’ve been adjusting to the changes epilepsy brought to my life. The first couple of years certainly weren’t easy breezy, but it’s all kind of a big blur to me now. I remember lots of doctors, pills, post it notes and catching rides with people. After I realized I couldn’t juggle work and epilepsy, and left the 9 to never-ending grind, I had very few problems for about 4 years. I had regular checkups with my neurologist and just routine blood work to make sure my medication levels were where they needed to be. I felt good. I couldn’t multitask but I could plan and organize enough again. Life was good.

Last Spring things slowly began to change and it caught me off guard.  I was not prepared for things to change.  My medicine quit working and I was having breakthrough seizures. The last year has been a learning experience. Those 4 good years gave me a false security that I had this thing licked. Don’t get me wrong, I believe I can have this thing licked, but I’m not there yet. Over the last year I have spent every month weaning on or off multiple anti-seizure meds in search of the lesser of the evils. It’s the great hunt for seizure control versus manageable side effects. Ask my family, it’s a pleasure to experience. One did a great job controlling the seizures but made me want to crawl out of my skin and I couldn’t sleep at all. Another controlled seizures really well, but it caused me to pretty much wake up without any patience or filter for appropriate speech (and pretty much tell off anyone I saw). That was a really bad bad medicine. Another one made me slur my speech, delay my word retrieval, limit concentration and pretty much screw up all of my processing skills. I’m still suffering the effects of that one. Another one gave me the shakes. My current drug of choice upsets my stomach and I have to time my meals exactly to limit the nausea. Some days I can’t fight the nausea, even with food, and I just have to stay in bed. The medicine makes me sleepy and I need a nap to get through each day. I get dizzy moving from a seated position to a standing position. My gums bleed and stay swollen and are sometimes so painful it’s hard to eat.  I have lost some taste and appetite. My hair thins a little more each day. The blotchy deep purple in my hands and feet is another nice free bonus I guess. And this is the medicine I chose, because the others were worse.

I am not complaining, I am explaining. I count myself among the fortunate patients with epilepsy. Mine is controlled with medication. Although, clearly it’s not the perfect medication. Epilepsy is a disorder in my brain but in order for it to be controlled, I basically have to surrender the rest of my body to medication. Well, that’s just not good enough for me, not long-term anyway. I need more options, we all need more options and I need to find a way to make that happen. I’ve spent the last year researching and networking with others in the epilepsy community and I learned about The Epilepsy Therapy Project. I am thrilled to combine my love of running with the opportunity to raise money for a deeply personal cause.

I have formed Team SHAKEN, NOT STIRRED to run the Philadelphia Half Marathon on Sunday, November 18th and raise $3,000 for The Epilepsy Therapy Project!  I already have one recruit! Sharon McGowan has signed on to Shaken, Not Stirred, which seems appropriate since she is one of the few people who knew me well before all this and has been by my side through it all!

Click this link to visit our own TEAM SHAKEN, NOT STIRRED page to donate, to join our team and to learn more about The Epilepsy Therapy Project. https://epilepsytherapyproject.myetap.org/fundraiser/2012PHLMarathon/team.do?participationRef=3917.0.251389978

I hope to use my involvement with this project to spread awareness and education about epilepsy while I prepare for the race. I’m just beginning this project and my brain is still fried, though over-easy, from the variety of  drugs I have been on, and I’m still weaning off another medicine now. There will be lots more information and updates to come. This is a very exciting opportunity for our family to get involved with the epilepsy community. My hope is that something I do will help someone else be better prepared or perhaps need not be prepared at all.

Copyright © Gatewood Campbell, May 2012

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The Power of the Purple Ribbon

November is not just about the turkey. November is also National Epilepsy Awareness Month. It’s a little known fact and one that my family decided would become better known this year. This was a conscious decision that I made, and not one that I took lightly.

The most difficult part of sharing this blog is letting people connect the diagnosis to me. My blog lets people know I have the disorder. Sometimes that can be a tough pill to swallow, literally. When you pin on a purple ribbon the whole point is to raise awareness and hope that people will ask what it represents. It’s one thing to wear a purple ribbon and tell people you are wearing it because you know someone with epilepsy. It’s another can of hot tamales to tell a complete stranger that I’m wearing a purple ribbon because I have epilepsy. Get ready for some awkward moments, stares and comments. People have preconceived ideas about epilepsy and whether the information they have is true or false, and I had to be mentally prepared. I learned a long time ago (from our dear Kathleen) that awkward moments are more about the other person than me, and in the end, the cause is worth a few weird minutes of my day. After all, everyone has issues, I’m just bold enough to tell people what mine are.

Epilepsy Awareness at our house started with one spool of purple ribbon and one box of pins. Johnny came home and saw me with a glue gun (which is the absolute extent of my crafting skills) and asked what I was planning to do. I told him I planned to make a few lapel ribbons for us all to wear in November and maybe a few extras to give away. I made 10 ribbons that night.  I never could have dreamed what I would see unfold over the next 30 days!

One spool of purple ribbon and one box of pins is where Epilepsy Awareness in our house started. Here’s what it became…

my husband wearing a purple ribbon every single day, even if he never left the house.

my children wearing purple ribbons on their shirts, jackets and backpacks everyday and carrying extras everyday to share.

my 13 year old proclaiming Epilepsy Awareness Day at his middle school, speaking to his entire school, educating them and asking them all to wear purple to support the cause. All of his teachers, most of his classmates (some even in purple socks), many in his grade and dozens of others in the school supporting the cause by wearing purple and wearing the 200+ ribbons he shared.

my 8 year old following his brother’s lead, speaking to his entire elementary school about epilepsy and asking them to wear purple on the day he chose as Epilepsy Awareness Day. His classmates, decked out in purple (leggings and headbands included), students, faculty and staff wearing purple or one of the 100+ ribbons he shared, all because a little boy told them he was doing something for his mom.

posts on Facebook from friends saying that all the kids at the bus stop were wearing purple.

posts on Facebook from friends letting me know they were wearing purple.

my Mom wearing the same purple shirt day after day after day (I do so love my Mom).

my Mom’s co-workers sporting their purple duds.

my mother in law wearing her purple ribbon at Thanksgiving dinner.

my sister in law wearing purple on the day my son chose as Epilepsy Awareness Day at his school.

my friend wearing her ribbon at the school where she teaches and hearing how she is sharing about epilepsy with her students.

seeing one of my purple ribbons pinned neatly on a friend’s sweater when I met her for lunch.

a picture on Facebook of a friend wearing her purple ribbon and sharing the meaning behind it.

sitting down in church and seeing a friend wearing the ribbon we gave her the week before.

a relative who recognized symptoms I described in my blog, sought medical attention, and was finally correctly diagnosed with seizures.

a friend reaching out to me after experiencing break through seizures for the first time in years.

a phone call from an advocate in Tennessee who read my story and was looking for people willing to speak out.

an email from a lady in Nebraska who developed epilepsy from a brain injury and has never been able to explain how she feels to her family. They now read my blog and understand her emotions in a way she hasn’t been able to express.

one epilepsy fact or thought on my Facebook wall each day to educate and inform others.

our 4′ Christmas tree in the playroom decorated with the leftover purple ribbons.

A dozen spools of purple ribbon and 5 boxes of pins later, Epilepsy Awareness took on a life of its own in 30 days.

Where this goes from here and what my role in it will be, is anyone’s guess. The staggering truth is that Epilepsy affects nearly 3 million Americans and is still one of the least understood major chronic medical conditions. Unfortunately many patients have cases too severe to speak for themselves. They can’t speak up but they desperately need people willing to speak out. I’m among the fortunate, I’m able to speak up and I’m loud enough to speak out. Hang on folks, please remain seated with your seatbelt buckled and enjoy your ride. Something tells me this train is about to leave the station.

There’s power in that purple ribbon!

Copyright © Gatewood Campbell, December 2011

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Trash to Treasure and Raising Awareness

November is Epilepsy Awareness Month. My family and I are wearing purple ribbons everyday to raise awareness. We invite our friends to share awareness by wearing ribbons and telling others why you are putting on purple this month!  Awareness begins with sharing and I’m sharing my own story of Epilepsy.

My memories until 2005 are pretty clear. After that, the memories fade for a few years, and then pick back up somewhere in 2008. I still fight back the tears and anger when I think about the years of my children’s lives where I was physically present, but mentally absent. I was robbed of fully participating in some of the best years of their childhood. My career ended when I thought it was just beginning. A Mild Traumatic Brain Injury in 2005 led to Epilepsy and my world was rocked. I wasn’t shattered beyond repair, but I was thrown into a world I did not know existed and was transplanted into a body and a mind that I did not recognize. Each day is a lesson in both patience and perseverance with myself. I’m trying to embrace the changes that life has brought me, accept the reality of my brain injury and learn to live with Epilepsy.

It was a simple errand. I needed to price trashcans for an upcoming event where I worked. I went to a local store. I remember walking in the store and turning left past the cash registers and then hanging a right between clothing and cards. Then I remember looking into bright lights, feeling plastic and air on my face, hearing strange voices rattling off medical jargon and a lot of loud beeps. I saw scissors cutting the left sleeve of my coat and sweater. I tried to move my arm away from the scissors but my arm was stuck. I tried to raise my head and look around but my head wouldn’t move. I remember the fear I felt when I realized I was in an ambulance and strapped to a gurney. We will never know exactly what happened that day. Someone found me on the trashcan aisle. There were no witnesses to tell us why I ended up on the ground with a gash bleeding on the side of my head.

I spent the next two months being chauffeured to every specialist imaginable but there seemed to be no explanation for my accident. My blood tests were good, X Rays were good, MRIs were good, MRAs were good, EEGs were good, EKGs were good and tilt table tests were good. With no obvious illness or condition, the doctors released me to drive and resume my life. As weeks passed and I attempted to go about my normal routines I quickly realized that nothing was normal. I couldn’t remember my address, my phone number or my birthday. I couldn’t remember where my children were and I couldn’t remember where I was supposed to be. I couldn’t even recall the names of my own family members. Doctors assured me that all their tests showed I was fine and they expected a full recovery. I knew I was not fine.

Six months later I was staring into bright lights again. This time I was on the floor of a children’s store in the mall. My head felt like hammers were hitting it, my shoulder ached and my tongue felt like someone had stabbed it with a butcher’s knife. A woman’s face was above me and she told me help was coming and that I would be okay. She said my husband was on his way. I remember screaming for my 2 year old son. She pointed to the back of the store where customers had occupied him with toys. When I asked what happened, she said I had a seizure and she had witnessed everything.

My Neurologist confirmed that I had Post Traumatic Epilepsy. I spent another six months in the passenger seat being chauffeured around town, dependent upon friends and family to help maintain some sense of normal for my children. After several trials of medications we finally found one with manageable side effects. I went through months of speech and cognitive therapy to learn new coping strategies for my deficiencies.

My life changed forever in 2005. I fought hard to regain what was lost but I had to face the reality of the long-term injuries I sustained. I left my career in 2007 to focus on my own physical and mental health and on my family. I’ve been on a journey of self discovery while learning to cope differently in a world that expects me to be the same. The shell of my body remains the same but my inner workings have been overhauled. I’m working to fight my constant fears of another seizure. I’m learning to accept the rest of my life on medication and hoping that the side effects won’t rob anymore of my time. I’m trying to make Epilepsy understood and accepted among people and a world that does not understand and does not accept it. I’m also learning that when I’m brave enough to share my story there are people who want to understand and who want to raise awareness.

I have a brain injury and I have Epilepsy, but they do not have me. I wake up each day and make a conscious decision to embrace change, accept a brain injury, live with epilepsy and thrive in my own skin. My journey began with a trashcan and I’m determined to turn it into treasure.

Copyright © Gatewood Campbell, November 2011